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How to stay sane when stuck in bed with chronic illness or recovering from surgery. An insider’s guide

Staying level headed with debilitating pain. 

Those of you that already follow my story know I’m no stranger to surgery. I’ve  had my 3rd brain stent surgery for IIH (Idiopathic Intracranial Hypertension ) on 15th November. I was aiming to get downstairs on Saturday and I made it. It’s so important to have goals to keep you motivated. I had a family day yesterday too!

But I’m going to be spending this week in bed again recovering, as expected. My pain levels are high today and I had a bad night’s sleep, but I don’t regret it. Days with family are what keep you going . My condition is extremely debilitating but I’m not seeking sympathy; I share my experiences to raise awareness!

Please note: if you have questions about IIH, any chronic illness or mental health concerns; please speak to a trained health professional. These tips are about self care and any advice I share is based on my own experiences.

I shared this selfie on social media, 10 days after surgery. It was youngest’s 13th birthday and I was in bed, fed up that I couldn’t celebrate. The response to this post has been amazing. I received lots of supportive messages and my husband, Joel, was asked at work how I stay sane and positive when I’m stuck in bed for weeks – struggling to get to my en-suite bathroom at times.

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So here’s my guide to staying sane as a chronic and invisible illness warrior! 

  • Don’t fight the pain! I used to be determined not to give in to the pain and I’d push myself to do too much too soon, making my recovery take longer. Now, I try to listen to my body and have retrained my brain to know that it’s okay to rest, This has taken years of making mistakes, until being taught to recognise and change patterns in my behaviour by my coach, Josie (details below).
  • Ask friends and family to tell you when you’re looking tired. It’s easy to miss signs that you’re flagging, but don’t shy away from asking those close to you to say if you look like you need to rest. If someone tells me I look rough I’m not offended, I just realise that I do hurt a lot and may need that pain relief!

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  • Remember your condition doesn’t only affect you. A delicate ecosystem occurs for most familes when someone has a chronic illlness. This means any change has an effect on family life. If you’re the one in constant pain, then your contribution to family life is probably limited. For example, I usually do online grocery shopping and am usually the mediator. Plan for those times when you can’t make your usual contribution. Try asking a friend to pop to the shops or do some jobs around the house, so your partner doesn’t have to do everything!
  • Give yourself time to recover. I always seem to forget how tough living with daily high level pain is or how hard recovery from surgery is. So I tend to think I’ll cope better than I actually can. Now I set myself goals and break these down into smaller steps. E.g restarting your physio or getting dressed before venturing downstairs. Whatever goals/steps you take need to be all about you! This is the time to practice self care! Maybe keep a pain diary or notes after surgery, so you can look back at what has worked for you in the past,

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  • Be honest about having visitors. Let’s be honest, the novelty of surgery soon wears off and friends might get bored with your chronic illness. You’ll probably stop getting as many flowers and cards, but hopefully your friends will still support you as much as ever. For me, receiving a text cheers me up, but having visitors (when you can) is vital! You’ll get a mental boost and it breaks up the bedroom boredom. But, if you’re in too much pain; be brave and postpone. True friends will understand and if they don’t, then you don’t need them!
  • Keep a gratitude journal. I spend time every day reflecting on what I’m thankful for. I write 3 positive things in my diary every night or the following morning, This can be anything and it’s the little things that count when you’re recovering from surgery or a bad flare. Washing my hair, managing to eat a proper meal, having a snuggle with Joel or a giggle with my boys mean so much to me in that acute pain phase. I’d suggest starting getting into this routine before surgery. It’s also really nice to share these with friends or family!
  • Meditate. I can’t explain how much meditation helps keeps me calm in hospital and in the following weeks. I download my favourite meditations (in case there’s no WiFi) on my phone and take my headphones to block out the horrible noises on a ward. They also help me sleep between hourly obs through the night! I also use techniques I’ve learnt to visualise my happy place to lie still during a procedure or anaesthetic. You can read my tips for meditation here.
  • Use affirmations to visualise positivity. Ok, so I know the word meditation may have scared you off, but stay with me! Using affirmations has been the key to staying sane through 3 brain and spine surgeries this year! I also use affirmations cards from TheYesMum  (@theyesmummum on Instagram) daily.

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My coach Josie, from Worry Freedom created personalised affirmations to help manage my worries, which are mainly about how surgery impacts my family. She turned each concern into a positive affirmation, such as ‘I am proud that my boys have built resilience’. I record these as voice memos on my phone and listen to them before, during and after my stay in hospital. They’ve helped me to stop worrying about everyone else and concentrate on my one job – healing.

  • Ask family to spend time with you in your bedroom. When you’re always in bed, it can get very lonely. So, whether it’s snuggling with Joel watching TV, having a chat about the day or watching a film with everyone on the bed; having my family come to me is so important. For example, we ate youngest’s birthday meal in my bedroom, so that I could still be a part of his special day.
  • Entertainment. I’ve always been against TVs in bedrooms (personal choice), but after my first surgery Joel set one up in my bedroom so I could watch my favourite comfort movies. It’s stayed! I rely on my iPad so when we realised this was going to be our new normal, Joel set up Apple TV so I have lots of choice. I’ve also have audible and Spotify so I can listen to gentle music or spoken word on the days when I can’t open my eyes.
  • Bonus Tip – When you’re doing better, but still stuck in bed or the house I think you need a hobby. Many chronic illness warriors craft and this helped me not to feel so lost when I’d been diagnosed. I’d taken silversmithing classes before falling ill, so I began making beaded and up-cycled creations. Now I run my own online business with an Etsy shop. I’m closed whilst I recover, but I’ll be posting more about this as I prepare for reopening. You can see what I make on my social media pages too. ⬇️

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So these are my top 10 tips for managing to stay positive, or at least rational when can’t do anything. But hey, we’re all different and these are just what works for me, If you’ve got the money to invest in working with a coach, do it! It’s all about finding solutions and a good coach can change your outlook! I had counselling after diagnosis, when I was still grieving for the life I’d had. If you’re struggling please talk to your GP/Doctor straight away!

Are you recovering from major surgery? Do you have a chronic illnesses? I’d love to hear about what you’ve tried if you’re housebound or bed-bound. What tips do you have to keep rational and level-headed? 

Chronic Illness Bloggers

How to Cultivate A Grateful Life – A Beginners Guide

A smiling Indian lady with long black hair and brown eyes holds her hands together in front (and to the side) in a Namaste Greeting. She is wearing a green, red and orange top with stud earrings, a silver watch and an orange and white bangle. There are white, green and maroon half circles in the corners and the wording at the top says ‘How to cultivate a Grateful Life: A Beginners Guide’
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How to Cultivate A Grateful Life – A Beginners Guide – ‘I think of 3 positives at the end of each day and I’m thankful for my friends and family. This simple act has helped me grow as a parent during many tough times.’

How to Cultivate A Grateful Life – A Beginners Guide

In this step by step guide I’m going to show you how to grow from feeling mostly meh to predominantly pleased by lightening the load using these pointers. I’ll explain how my life as a parent with anxiety and chronic illnesses took me to the lowest lows of my life to being as well balanced and harmonious as a landscaped garden.

When I recognised that I was dragging my family down with me when I’d get grouchy with my boys or snap at my husband because I couldn’t cope, I knew I had to change. I had to find a way to climb out from the undergrowth for them and it was as simple as making 1 or 2 small changes first! This guide covers the 10 steps it took for me to live gratefully.

When the Light Dimmed and I Couldn’t Breathe

I struggled with my mental health on and off for years after Youngest was born. I had post-natal depression and suffered from panic attacks for months after nearly losing him many times in his first 48 hours. The first time we left the hospital for some fresh air, once he’d stabilised, I couldn’t breathe properly as soon as we stepped out of the hospital door.

After being checked out by doctors, I was told it was a panic attack. It happened again, each time I left him in the NICU and continued once we were home, especially as he was rushed back into hospital for a 5 day stay a few weeks later. I’d panic if he didn’t snuffle when sleeping and even had a GP tell me that he didn’t know what I wanted him to say.

I just needed to be told he was okay, which he was that day but not every day. All this went on in the same 12 months that I lost my Grandpa and Father In Law as well as four other family members and friends that died too young. Joel and I had to find our way through all of this heartbreak, which was a massive strain, and I needed my voice to be heard!

Finding the Air and The Space I Needed to Grow

I was in very a bad way when my GP listened and I was counselling sessions which had a positive impact. My counsellor guided me towards the air holes when everything was suffocating me. Joel held on tight to my hand and I had a 2 year old to think about as well as a baby so I fought hard and together we found the light we needed in our lives again.

Making these big changes led the way but it was little changes that were key to me being purposefully grateful for my family, my remarkable husband who gave me space when I needed it even whilst he was dealing with his own grief. I had 2 beautiful and healthy children (Youngest was given the all clear aged 1) )to be thankful for.

A photo showing my 2 children when I was spending time nurturing them and learning to be grateful for wha5 we had. They’re running across the grass, in front of the camera in profile, in Brighton Pavilion garden with the trees in the background. Eldest is closest to the camera and is wring jeans and a green, hooded winter coat. He has short brown hair and a big smile. Youngest is slightly ahead of him and much smaller. He’s also wearing jeans and an orange and cream, hood winter coat. He has ginger hair and has his head turned away from the camera.
As a family we grew stronger roots and the trail that the our tears left behind faded.

I needed time to nurture our boys and bed in strategies to keep me on a positive path. Just look at these faces to see all I had to be thankful for.

We got plenty of fresh air on family walks and I exercised outdoors when possible. I had breathing space to appreciate the world around me and to recognise all the positives I had in my life to celebrate!

Cherishing Life Every Day and Seeking Adventures

When I was diagnosed with migraines a couple of years later, it threatened to uproot all of the hard work we’d put in to creating space in which to appreciate our family and the life we’d built. But we’d done the tough bit and with Joel by my side I managed to stand tall, despite the wobble. In many ways it was the catalyst to my valuing every day with them.

So when my physical health stabilised we grasped every opportunity. We embraced travel with unbelievable family holidays and wonderful long weekends just the two of us. We embraced live music and made the most of living close to London and Brighton; immersing ourselves in the culture and experiences available to us.

When I took a promotion with full time hours when Youngest started school the challenges came and the cracks in the ground around me started to appear again with the stress. I had panic attacks driving to work or would arrive in tears. It wasn’t the right place for me.

A coral background with the text ‘Begin each day with a grateful heart in blue and white writing.

So I went back to part time hours and rediscovered my love for teaching and as part of a small school nurture every child.

I was happy to wake up and drive along the country lanes and have time to exercise and be with my family at weekends. But I needed the buzz of a challenge and landed a Senior Leadership role in a lovely school. Unfortunately I fell ill after one term and this project was abandoned mid sentence!

The Abandoned Vine and The Weeping Willow

It had been an on off relationship with cultivating a grateful life as my mental health wasn’t being nurtured continually. I was on uneven terrain so I became a weeping willow, a common symbol of grief. Isolated and feeling like the only one with a constant migraine, I hardly saw any friends because I found it hard to have a simple conversation.

I was stuck at home, unable to carry out plans we’d made to see gigs and I felt suffocated. When we were together as a family, I’d be shushing the kids over nothing because of my hyperacusis and getting grouchy, I couldn’t sit with Joel on my right because his deep voice triggered tinnitus. So family life became strained, left as though an abandoned vine.

I found other chronic migraineurs online but this compounded my feeling of hopelessness. However the light shone through my protective foliage when I found a group of amazing people who gave me support, inspiration and laughter. They helped me gather strength and find the positives again! Maybe I wouldn’t be left to go to rack and ruin after all!

It turned out that I was actually suffering from IIH or Idiopathic Intracranial Hypertension. You can read more about this condition in this blog I wrote a while back: https://laughingwhileyourecrying.wordpress.com/what-is-idiopathic-intracranial-hypertensioniih-iih-brainandspine/p

The Beginners Guide to Results From Being Grateful

A wooden surface has most of a white porcelain heart on the left hand side of the image. It has the phrase ‘I am grateful’ in black text and hessian string tied through a whole at the top. Below is green background with the words ‘The Beginners Guide To Results From A Grateful Life’.
  1. Find someone to give practical advice to help you solve the root problem.
  2. Connect with someone to confide in when times are tough.
  3. Get help with complex applications for monetary support.
  4. Seek counselling through very tough times.
  5. Find your tribe, the people who get what your going through.
  6. Pass on acts of kindness to others going through similar situations.
  7. Share your story with those you could help those beyond your group.
  8. Change at least one habit to help you live a healthier lifestyle.
  9. Find at least one positive or small win from your day.
  10. Record your positives from each day In a way that you can refer back to.
  1. I was given a crash course in how to deal with chronic illness life, which at the time was still diagnosed as migraine. My migraine friends would chat to me on the phone when I had particularly bad days or worsening news. There were there to offer me practical advice, including introducing me to my trusty Migracap and meditation.
  2. I made many online friends but have been lucky to meet some of these truly amazing people who I could confide in, as well as having Joel of course. One truly amazing lady told me that she would be there in spirit to squeeze my right hand and she would squeeze back. This simple invitation became my safety harness!
  3. I learnt about options for having to leave my teaching career and how to plan for the future. I was supported when I had to fill out forms for ESA and PIP support and how to deal with the face to face meetings with them, social workers and more besides.
  4. Little did I know then where chronic illness life would take me. Having friends that get it to confide in meant that there was always someone there if I had bad news. If Joel was at work I might have to wait all day but his support is what got me through, I recognised early that I needed counselling again to help me cope with extremes.
  5. These people became my tribe and having them there got me through the really scary times when I couldn’t communicate at all. By this point I’d narrowed down my friendships where people disappeared when it got too much. But once I was diagnosed with IIH and had a treatment plan of how to help me, I had hope again.
  6. As my confidence improved I developed a more positive outlook because I could pass on these acts of kindness to friends I’d met online with similar symptoms to me. Meeting members of my community has allowed me to understand chronic illness better and I can offer advice based on other’s challenges from different perspectives.
  7. I started my blog to be able to support my readers during their own tough times. I share information for awareness of my Conditions and mental wellbeing. I share what’s helped me as a parent with chronic illness, finding a purpose and having a healthy lifestyle and have created a community where people can ask my advice.
  8. By being so open I’ve really found out who my true friends are so I’ve worked hard on developing my self esteem. I try not to let those who can’t cope with my no filter speak and inability to communicate well all the time, impact on my own wellbeing. Luckily I’m overwhelmed by the support and understanding my friends give me.
  9. I was inspired early on, when I first wrote this post in 2014, to think of one positive at the end of every day, however small. It could be that I managed to wash my hair or that I saw my nephews and nieces. It might be that Youngest and I baked a cake or that Eldest tidied his room – it’s rare. It might be that Joel and I watched a great film!
  10. Now I write 3 positives every morning in my journal about the day before as I’m too tired to write at night. I write 1 thing that made me happy, 1 thing that made me proud and 1 thing that I’m thankful for. If I’m going to always be in pain, I’d rather be happy in pain than miserable and in pain anyway.

Hey, you might like to check out my top tips for setting up your day to be positive using affirmations. These easy tips can help you to build on to these tips above. https://laughingwhileyourecrying.wordpress.com/2019/02/03/5-morning-affirmations-to-guarantee-a-successful-day

Conclusion

A quote saying ‘Just one positive thought in the morning can change your whole day. Anonymous

I give myself limited jobs to do each day, the amount depends on whether I have a friend visit, so that I can still take time to take that one positive thought and remind myself throughout the day.

My life is no longer about a teaching career but it is about the little things in life. Having a positive thought to focus on helps me to stay thankful for having supportive friends and most importantly every moment with my family.

Almost every day a friend will mention that they just don’t know how I’m able to stay positive despite being in constant, debilitating pain. I’ve been told by many friends that I am the strongest person they know or even that I am an inspiration to them. No, I’m not singing my own praises here; I just wanted to share how this makes me feel.

After years of living with mental and chronic illnesses, I’m honoured to be able to inspire my friends with my positivity. I feel that I’ve been passed along insider knowledge for helping others that are suffering with pain or illness; sharing closely guarded tips, tricks and wonderful acts of kindness. My strength has been sent my way and I share it freely.

If I can raise a smile for someone or give them extra strength to get through their day, then I’ve achieved what I set out to do when I started this blog. However, these days I can see what led to me thinking of one positive thought a day and now extend to recording 3 positive thoughts for every day.

If you can only do one of the 10 tips in this guide to a more grateful life, then please find your person to confide in. We all know someone who has needed someone to check on them at some point so if you can be a confidante then make sure your friends know they can talk to you about anything, at anytime. A grateful life starts with a small win and a grin!

Have you got any tips for creating a positively grateful lifestyle that I’ve not mentioned? Please pop them in the comments below. I’d love to read them and I do reply.

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*If you feel you need professional help then please speak to your doctor. This information should not to replace medical guidance and is based on experience alone.

Chronic Illness Bloggers

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